Month: May 2017

We’ve been home over 24 hours and Finley is doing great. She hasn’t wanted to take any pain meds- but I finally just made her take one dose because I could tell she was in pain even when she kept saying her pain level is zero. Stubborn, warrior girl. Otherwise, things seems to continue to progressing in the right direction as she continues her business of healing.

Over six and a half years ago, we started this journey and through the many blessings we received, the Lord impressed upon us to do more and walk with other families in similar places and show them the same love that was given to us. To be on the receiving end of such love and blessing AGAIN, has been such a powerful reminder that there is no gesture that is small. A text, email, a Facebook encouragement, a cup of coffee, a meal, snacks, it all means so much. Thank you to everyone that has just showered our family with prayers, love, and tangible blessings. I can’t find Finley under the mountain of stuffed animals she has received. Rowan commented on how loved she felt, even though she missed us. That was such an answer to prayer because I didn’t want her to feel alone and forgotten. She had so much fun during a difficult time, which makes my heart so happy.

The nurses commented several times on our amazing village of support. You truly are the hands and feet of Jesus when you bring Kombucha to the hospital for Finley at 9:00pm after I posted a Facebook request!

So again, thank you to everyone who has supported and loved on our family, and continues to do so. We love and appreciate you all so much!

Yesterday a new bacteria was found from the cultures taken from the patch. It took several days to get it to grow- and it has a name I can’t remember. It is resistant to the antibiotics we have been on, and it did not show up in any of the previous cultures. Infectious Diseases switched up our antibiotic regime, and we will be done in 14 days! There is an end in sight!

Yesterday was a big day with lots of steps forward. Finley left the room, went on a wagon ride, walked around and ate solid food!

In fact, she did so good- that they decided she could go home today and finish her healing from the comfort of our home. I am writing this update from the comfort of our couch. The timing couldn’t have been more perfect. Last night, I think Finley had reached her limit of all of this and had a meltdown and refused to take her medicines. It took a long time, many tears (hers and mine), mom being asked to go take a walk, and finally Finley cooperated as not to get anything more in her IV.

She assisted in the removal of all 3 of her IV access points. She pulled off all the tape and the lead stickers. Have I mentioned what badass she is? Julie removed her main drain this morning and we return next week for the red rubber band drain to be removed from her back wound excision.

She is currently playing in her room with her bounty of booty because we have an amazing community that has blessed our socks off.

At some point we will ask her to clean her room… but not today.

More healing to be done, praying for every bit of infection to be gone and never to return. Finley needs to keep up eating and drinking fluids (which is hard even on good days) and take her stockpile of meds and just keep up the good work!

Yesterday was a difficult day, but a day where Finley made some excellent progress forward.

Sitting in a chair may not seem like a big deal to most, but when you have several incisions and drain openings- it was a HUGE step in the right direction! She sat in the chair for over an hour, which really helped improve her lungs too.

They also ordered her to move more and use the bedside potty, which she accomplished 6x!

They ordered an X-Ray because she kept complaining about lower abdominal pain and her belly was very firm. She had quite a bit of air and stool in there, so they ordered meds to help move things along. We had success quickly and that really helped her feel much better!

She did excellent over the night and was able to rest. She only woke twice and even asked to do her breathing exercises before going back to sleep! Without morphine on board, her sats were much improved and she didn’t need blow support at all! This meant mama had an amazing night of sleep. After six hours of sleep and a shower I feel recharged and reenergized!

Her epidural was weaned down and taken out this morning- it was getting red and they were worried about infection, so Finley had a unenjoyable morning filled with tape removal and bandage changing- but end result was one less tube in her!

Her front incision is also getting a little red at the edges- so please be praying that we don’t have any new bacteria trying to start a party.

Yes- that’s solid food you see! For the first time since Wednesday night, Finley got to eat something that wasn’t liquid! She ate half of this delectable treasure and it’s been over an hour and we haven’t had it try to escape.

The hope is to continue to let her eat whatever sounds good (albeit slowly) and we can move to oral pain meds. We also hope to get her moving more and maybe, just maybe, we can get her out of the room today and explore the play area or even go outside to the garden (gasp).

There are awful, painful things she HAS to do, so I am careful to try and let her have control over the very few things she can control. She called it torture this morning, and I can’t argue with her. It looks and feels like we are torturing her, even though it is to help her. There is no more agonizing thing for a parent to watch than your child hurt like that and know you have to let them get through this pain, to get to the good on the other side. I see a strong parallel to how God must feel about us. He sees the bigger picture too, and though it hurts him to see us experience these painful things- he knows what good there is for us just on the other side of “the torture.” For that, and so many other things, I am very thankful today.

It’s been up and down. Last night had its rough spots. When we have the right mix of pain meds, Benadryl, and friends- she has periods of time where she isn’t in much pain (unless she moves) and is comfortable. Then she will do the things she needs to do to keep her oxygenation up above 90.

But when the pain breaks through, my poor girl is in high levels of pain and doesn’t want to take deep breaths and her oxygenation drips to 70s and 80s and she doesn’t want to do what we need her to do and it’s a dance to get her back on track.

This cup directs air at her to give her a little extra help. She hates it, but does not want a nasal canula, so we sneak it at her when she is distracted or asleep.

Prayers and Goals….

1. Take more liquids by mouth.. she has tolerated the few sips she took yesterday, but doesn’t have much desire yet for more..

2. More coughing and deep breathing. There is a risk she will develop pneumonia if she doesn’t work harder.

3. Pain. We need the meds to cover the pain and be able to stay on top of her pain so she can move a little and cough and do all the things she needs to do to continue to progress.

4. Continued healing and no complications. No more infection in her body!

5. For her stomach and bowels to wake up all the way! She wants solid food, but until she drinks more and everything is awake- that isn’t going to happen.

I’m exhausted. Sleeping in 30-90 minute increments is tough! But I really can’t complain because when I look at what Finley is enduring I just wish I could take her pain from her.

Finley had a great night – meaning no huge surprises! Her breathing continues to improve, but we still need her to do the breathing exercises that encourage her lungs to open up and cough (and this is painful for her with the incisions). She is becoming more aware and less groggy… we are having more and more time with her eyes open and glimpses of her normal self slowly emerging. Her body has been through a lot in the last 24 hours but it is progressing really well.

The plan is to remove her foley today, so we need her to be able to pee without it, or it goes back in. We need her stomach and bowels to wake up. They are going to allow her to try ice chips today when she is ready. She had some Tylenol orally last night which she promptly “returned.” She has an epidural for pain management right now and may continue to have that until Monday as long as it holds in place. It is the best option for staying on top of the pain, so hopefully we don’t have to remove it early.

Again, things are moving in the right direction. We are so thankful.

“Praise God, who did not ignore my prayer or withdraw his unfailing love from me.”

Rejoice with us!
-the organs came off the patch with ease and minimal blood loss.

-there was enough diaphragm to do a primary close!!! This is such a huge answer to prayer.

-she did great throughout surgery with no issues.

-the surgeon said it couldn’t have gone better!!

Ephesians 3:20 “Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”
Prayer requests-
-for no post surgical complications.

-for all the infected tissue to be gone and continued protection against further infection.

-for her breathing… her diaphragm is having some issues waking up and her oxygenation keeps dropping… (but praises that she is breathing room air!)

-for an uneventful night in the PICU and that she will be able to go to Peds floor tomorrow AM.

We have felt such a covering today. I can’t even thank you enough for going before and covering us in prayer.. we so appreciate every word uttered on Finley’s behalf!

Finley said she was scared on Sunday night about surgery… we prayed, and then I prayed a lot more for her. Then Monday I picked her up from school and as she overheard me tell a friend that I didn’t want to talk in front of her Finley says, “Mama, it’s ok now. You can talk in front of me. I don’t mind.” I ask her, “But I thought you were scared and didn’t want to talk about it.” To this she says, “I’m not afraid anymore.”

Huh? Was my reply. She tells me she locked her fear in a box, or rather a cave. I asked her to explain this, worrying that she is repressing her feelings.. and she tells me that she prayed and God took her fear and locked it in a dark cave. It’s gone.

Our God is so good. To have the faith of a child. I have been wrestling with fear since this all began. It is an active process for me. A battle. For her, her faith is tells her God can just take it from her… and he does. For me, it is more of a daily process… it is continually pressing in to him as a reaction to those fearful feelings. I need him on IV right now. I just reminded her, if the fear does come back – she can just give it back to God again – that’s just how it works.

Thursday, she will be on a clear diet for 24 hours, just jello, popsicles, and apple juice. Praying that she doesn’t notice any hunger pangs and we have a great, mellow day at home.

She still has a bit of an occasional cough, but no fever, Again, just praying if it’s God’s will for surgery this week, that this cough will go away entirely.

Psalm 23

The Lord is my shepherd; I shall not want.2 He makes me lie down in green pastures.He leads me beside still waters.3 He restores my soul.He leads me in paths of righteousnessfor his name’s sake.

4 Even though I walk through the valley of the shadow of death,I will fear no evil,for you are with me;your rod and your staff,they comfort me.

5 You prepare a table before mein the presence of my enemies;you anoint my head with oil;my cup overflows.6 Surely goodness and mercy shall follow meall the days of my life,and I shall dwell in the house of the Lordforever.